Healthcare on a personal level - 1245565

catdander
Posts:

My experience with being out priced on drugs is on a much simpler scale but I think is encompassed within the same problem.

For many people an extra $1000 a month isn't even a question, it's not on option. We certainly would have been hard pressed to find resources to pay the $3500 a month (or more to the point maxing out D's drug cost before insurance took up the rest) for tarceva without genetech's help.

The US is on a non-sustainable track as Dr. West stated.

I never thought I'd find myself in a situation where I felt as vulnerable as I do now with no insurance and in need of its use. I've had insurance my entire adult life until recently. On a good note for myself, I'll be able to buy insurance in a couple of weeks, due to some very specific circumstances, from the federal pre existing condition health insurance plan started after the passage of the recent federal healthcare act.

I'm on the same slippery slop of cost vs efficacy just in a different place.

I have no insight nor any thoughts beyond what Dr. West has stated well on the blog and comments.

D hasn't had any limitation to his cancer care except the scary few days of trying to figure out how we were going to deal with the cost of tarceva mentioned above. We've gotten grant money from a co-pay grant that I don't even know unless I dig out the paperwork. The oncology group found and did all the work on that.

It is no secret that more and more people are being out priced on healthcare in the U.S. I hope I've not gone too far off track here.

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Reply # - July 20, 2012, 01:10 PM

gn21
Posts: 144

I am lucky enough to have never had to consider the cost of treatment.

In Australia we have a Medicare system. Once we hit a certain income limit we contribute via a taxation levy. At a certain age and income levels people pay the levy, plus an extra penalty if they not have private insurance.

Our national health system pays for all health treatment. The only real issue can be the waiting lists!

Once approved, our system also subsidies drugs.

Our private insurers have no control over our treatment, and can't kick us out, once we are in - thank goodness!

For me, most of my treatment has been covered by our national system, my insurance, or clinical trials. At one point I may have needed to pay for tarceva at $3000 per month as it wasn't approved as a first time treatment, but luckily by the time I did need to pay it was subsidisied and I only paid $30 per month.

None of this is to say that the cost of treatment in Australia is not becoming an issue. our aging population is placing an increasing burden, and government is finding new and sneaky ways to ensure we can pay for it.

In Australia we have been a bit perplexed by the debate in the US regarding your proposed new system. Ours has been in place for many decades and we just take it for granted.

Gail

Reply # - July 20, 2012, 04:57 PM

double trouble
Posts: 573

This has nothing to do with new drugs or treatments, but one reason I can't get my head around the idea of doing the surgery that has been recommended is the cost of my care afterwards. If things go badly and I need home oxygen, I can't afford that. And I am very proud of the fact that I live independently right now. The thought of my family having to make major changes, moving to a larger home to accommodate and baby sit me is beyond my imagination. Even if they wanted to I don't see how they would afford it. And home health care is out of reach.

So, even if second and third opinions end up suggesting that surgery is my best shot at long term survival, I don't think I can do it. It's a real dilemma, and most of the time my mind just checks out and I have to stop thinking about it.

Debra

Reply # - July 20, 2012, 06:02 PM

Jazz
Posts: 279

It's a very slippery slope. My husband is currently self-employed and I'm sweating bullets at not having received COBRA paperwork from his most recent corporate employer. He can get individual insurance as he's young and has no coexisting conditions, but it's scary! I'm on an individual plan which was converted after COBRA ended, so my premium is astronomical, but as long as I get the care I need, it's worth every penny. It's a race between my retirement fund and how much longer I'll go on living. While I can go on Medicare, I'm finding that the cost of "gap" insurance, which covers the 20% that Medicare doesn't, costs almost as much as my regular premium (plus Medicare premiums, etc), and if I go the "advantage" route (elect a plan that administers the whole Medicare package), I'd still have to worry about the prescription "donut hole" and getting approval for things from Medicare (and still pay a premium or two).

For those of you outside the US, the "donut hole" is where the patient is saddled with 50% of the cost of a drug after they've paid $2500 but before they reach $5400 out of pocket. So with Tarceva, you're out that first $5900 right off the bat before you get into "catastrophic" coverage, at which point drug cost goes to something like $25.00. Every year. What a way to start the new year, by coughing up taxes and prescription costs! I can't imagine how anyone could ever afford Xalkori or Provenge or any of those drugs unless they were in the 1%...

Future looks bleak!

Jazz

Reply # - July 21, 2012, 02:05 AM

certain spring
Posts: 762

It is quite shocking to hear that people are having to endure these worries as well as everything else.

Debra, I don't know enough about post-operative care after lung surgery, but do you have a particular reason for thinking you might need oxygen at home? Forgive me if that's a crass question. It's just that I thought they tend to give oxygen in hospital - and wouldn't usually discharge you until you are ready to breathe without it. I hate to thinking of you worrying about money in this context. Maybe you should start a thread so the doctors notice it and can comment. I totally understand the whole thing about not wanting to burden one's family - I occasionally feel like a parcel which is causing massive inconvenience, and it's not a good feeling.

Reply # - July 21, 2012, 08:04 AM

double trouble
Posts: 573

It's a worst case scenario, if a limited resection is not possible and the entire right lung has to come out the predicted function of the remaining left lung is quite low (FEV1 of 0.9 for those who understand that stuff). So the surgeon, in preparing me for that worst scenario said I may require oxygen, hopefully in the short term, but possibly continuous. And I do see people every day living full lives with portable oxygen units, but with my reserve of only a left, previously resected lung I don't know if I would be left with that much reserve. One nurse even called it "surgery that would leave you an invalid." And I'm immunocompromised.

So to get back to this thread's topic, I couldn't pay my rent and pay for home oxygen too, even if I was still up and about. I'd have to move in and split expenses with a family member, who would also have to move to a bigger place in order to accommodate me. And we all have leases. This isn't something I can just jump into without considering the potential impact on all of our lives.

With much love,
Debra

Reply # - July 21, 2012, 08:13 AM

catdander
Posts:

I'm not sure about the home health care predicament Debra is considering. But the fact that she has comorbidities she is worried because she is a very possible candidate for needing supplemental oxygen on an ongoing basis or at least may need some initial home health care. There are some very peculiar plans out there and I wouldn't be surprised if hers doesn't include that.

I very much understand what Debra's saying (to a much lesser degree). I've been sick with an unknown cough since what my doctor determined to be whooping cough last September. You can only imagine where my thoughts go, and D's. But I've not seen the pulmonologist since January and I can't afford the meds I was prescribed to see if it is in fact a worsening of allergies since whooping cough. I'm biding my time until I can get the insurance I spoke about above. Debra has real decisions to make about her healthcare solely on a monetary basis. We've been programed to understand that if you can't afford it and you don't want to ask someone for it you can't have it. It goes for healthcare as much as a new sound system.
One thing Debra, what does your family want? you don't need to answer to us.

Jazz you may want to make a call to make sure the paperwork is moving through the process. I'm not sure but there are time limits. I was given such a raw deal that the company I worked for took a month and my insistence and assistance to finally find they don't even provide cobra, they are too small. You said corporate job so he certainly can access it but there's a timeframe.

Also I'd look into individual plans. Sometimes (depending on age and health) blue cross and others can be cheaper than cobra. With cobra you will pay what the company was paying plus 1% for the same insurance he was getting through the employer. I did a lot of fruitless searching and reading before learning cobra wasn't an option.

Our system is in dire straits, kinda like the educational system. very scary.

Reply # - July 21, 2012, 03:12 PM

jimmieruth
Posts: 19

Debra, I am so sorry you are having to deal with so much right now. I am pretty new to the community, so I apologize if I am saying things you have already heard. I have been dealing with cancer for many years, and in many diffehrent areas of the country, and I have turned to the American Cancer Society for help several times. I don't know where you live, but if you call therir National number, they may be able to assist you. When I lived in California, they arranged for a volunteer to drive me 50 miles each way for chemo treatments at no cost to me. They waited for me and made sure it was ok to leave me alone when they got me home. I am in Alabama now, and again needed help. They don't have local volunteers here, but they were able to provide names and numbers of other facilities. Also, for several years, when I fell into the donut hole, I discovered that my oncologist has a Social Worker in his office. The social worker arranged to provide me with my needed cancer medication. I understand our local hospital also has a Social Worker on staff, to assist with medical needs. I was of the mistaken idea that Social Workers were for persons on Welfare or such. I learned they were available for anyone who needed assistance with medical needs. And housing. Try the American Red Cross. Or church groups. As to your apartment lease situation, have you spoken with your landlords? If you explain your situation, he may let you out of your leases if you find you need to move. If not, perhaps local legal aid can help you. Call your State Bar Association for help in finding free legal assistance if you need assistance or advice. Also, anyone having insurance issues should read their policies with a magnifying glass. And ask. They may need to provide coverage that on the surface appears not to be covered. I am required to use plan doctors, but with prior approval, they paid for me to go out of plan to Vanderbilt. Try to take it one decision at a time. Good luck!

Reply # - July 22, 2012, 02:44 AM

certain spring
Posts: 762

I don't mind either way and will leave it up to you. These practical issues are obviously vitally important, not just for Debra but for others too.
I started the "Cost of new cancer treatments" thread because Dr West's post was generating some quite specific responses in the Comments section (focussing on a particular drug), which I couldn't follow - but it is a topic that interests me.

Reply # - July 22, 2012, 06:59 AM

jimmieruth
Posts: 19

I apologize if I went off subject. Unfortunately, while our cancer is our bottom line concern, sp often it is handling our daily needs that overwhelm us. And, like Debra, we just cant get our mind around them. Cost of treatment is a huge concern. Family, friends, work, commitments, plans. It's like, please just let me be sick and get well.

Reply # - July 22, 2012, 11:46 AM

catdander
Posts:

No apologies necessary jimmieruth. I've split the topics so we don't need to worry about confusing the 2 topics. Besides I think I was the one that highjacked the thread in the first place.

Whatever the situation it seems to be a very personally charged one. Our system is broken and has been. We work around it as jimmieruth described.

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